Hep C: Solved with a Cure?

daryl-lusterBy Daryl Luster

Hepatitis C is curable, reads the script; time and time again I hear this said, have read it, and say it myself. This is great news and a reality for more people than ever before.

Does this mean that the job is done? I suppose it depends on one’s perspective. As I listened to members of the science research community speak recently, it is “done and dusted.” “Problem solved,” the headlines will read. Okay, maybe no headlines but a mention on page 4 with a minor piece in the late evening news, even though this may be the biggest news in medical science in decades.

Hepatitis C is not “done and dusted” at all. Access to treatment remains an issue for most people living with hepatitis C here in Canada, and in some countries it remains only a dream. We may ask ourselves why this is the case, but many of us who work in this area understand the reasons all too well. And as someone who has lived experience with hepatitis C, I know them acutely and personally. My experience, however, is not unique.

One major issue is stigma; or, as I prefer to say it, discrimination. It is convenient to marginalize people when we want to ignore a segment of our society and their issues. This has been true in the past and remains alive and well today. We like to think that here in Canada we are above that kind of thing, but the reality is something very different, as I see it. For many people living with or at risk of hepatitis C, their access to real and meaningful resources remains poor at best. In my view and in the view of many of my colleagues, we certainly see the gaps that remain, partially because of a federal government that for nearly a decade was hostile to harm reduction practices and people who use drugs, as well as people who are incarcerated. In their view, hepatitis C was synonymous with punishment and fit conveniently in their ideology of disdain for anything socially progressive. They never hid this. It is my hope that we see an improvement ahead with the recent change in government.

If we are to ever see any significant strides in hepatitis C, we need to also embrace policies that address issues that go beyond access to drugs and treatment. In some distinct populations, there are much more pressing issues like ensuring there is a roof over people’s heads, and for others it is simple education and increasing awareness of the virus itself. As someone who was presumed to be focused for years on the baby boomer population (perceived by many to be mostly white, middle class, and to have easy and ready access to care and treatment), my position has always been that we need to include all people who are at risk of or living with hepatitis C. The HIV/Hep C co-infected, people who inject drugs, baby boomers, Aboriginal people, the incarcerated, and immigrants from high-prevalence countries are the key groups we need to see as part of any policy and of any well-implemented response to hepatitis C on a national as well as provincial level.

A meaningful response should include measurable goals and targets, and mostly we need to see involvement by the communities affected. Real and genuine participation is something that policy-makers and community-based organizations need to grasp as key to success, and it is my hope that people working in the area of service delivery and programming will seek out and seize on opportunities to involve those with lived experience.

Hepatitis C is not an esoteric science puzzle that can be easily remedied with one pill a day. I wish it were that simple.

Daryl Luster is a hepatitis C advocate and educator. He is the president of the Pacific Hepatitis C Network and a steering committee member of Action Hepatitis Canada. He is also a peer navigator for people living with hepatitis C and the administrator of several online peer support groups. As a person with lived experience of hepatitis C who was treated and cured, Daryl advocates for a greater commitment on the part of payers, whether public or private. He speaks with patients regularly, and it is their voice that drives him in his work.

 

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4 comments on “Hep C: Solved with a Cure?

  1. Stephanie on

    Hi! I have a neighbour who is 62 and has Hep c. He says there is a cure, but it’s expensive and AB Health will not pay for it. While i was in BC, i saw ads on the sides of busses advertising a Hep C cure. Is there any advocacy happening right now in Alberta to urge Alberta Health to do a group buy for these drugs for Alberta citizens, get a better price, and cover this rather than years of doctor visits, drugs, alternative therapies. I really like my neighbour, and I’d love to do a goFund me or something, but i think a better solution would be one where everyone who has Hep C could get better, and not be marginalized by illness. He still has a lot to give, but this disease gets him discouraged, and his treatment by the AB Health doctors makes him feel that his life is not worth the money to fix…

    Reply
  2. Sergey on

    Unfortunately, author didn’t emphasized that fact that here, in BC, person diagnosed with Hep C doesn’t have a chance to get help – unless willing to pay $120,000 cost. Normal working family cannot possible afford this. And doctor in Kelowna says basically that you have to be VERY close to death in order to get this treatment. So what the hypocrisy! You have to wait until your conditions will turn to REALLY bad and only then you MIGHT get help. No hope here. Sad. All those so-called advocates are nothing but buzz. No help available. Just unbelievable. No appeal process is available. Even convicted criminal can appeal – but not us, health care sufferers. What is wrong with this perception? Why? Nobody will answer. Hypocrites. Just tell us – if you are not rich enough to pay for your medicine – then just die and shut up.

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  3. Steve on

    I have genotype 4 (without cirrhosis), 59 years old, but Harvoni is too expensive for me. I’ve been living with Hep C for 7 years now and according to my doctor this new treatment is much more successful than interferon (interferon treatment in 2011 failed, terrible headaches for 6 months). Does anybody know where I could get Harvoni for a lower price? I’ve heard that you can get in India for $1000 and an ex Hep C patient recommended the fix hep c buyers club, has somebody tried to get Harvoni from there? I would really value your experiences because I’m getting pretty desperate and finding genotype 4 cure got my hopes up.

    Reply
    • Ali Murphy on

      Hi Steve, I’ve submitted your comment to our health coordinators who will get back to you with a response as soon as possible. Thank you!

      Reply

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